FPIES trials

It has been almost a month since Miss A received her diagnosis of Food Protein Induced Enterocolitis (FPIES). It has been a difficult month including many changes and struggles to form new habits.

We have had to focus intensely are making sure the floor is very clean, as if she eats a crumb, she could react. This has proven difficult with a 6 and 4 yr old in the house! I have changed my diet completely and am on a limited number of foods. I’ve been scouring the internet for new recipes, ideas, hoards of FPIES information, and alternative medicine. I feel like I have ventured down many deep rabbit holes of the world wide web. I inspect her diapers thoroughly, smell her diapers, talk about dirty diapers, and take pictures of all her dirty diapers, diapers, diapers.

We are currently on day 3 of her first food trial since her first reactions a few months ago. I am getting hopeful that apples are a safe food for her. We have a list of foods that are statistically lower to trigger an allergy. We pick one to trial and feed it to her, starting with approx 1/2 tsp, once a day, everyday, increasing the amount each day. The length to trial a food before deeming it safe varies greatly for each FPIES family. Some kids always react within 3 exposures to a new food. Other kids don’t react till the 7-1oth exposure. Some families have noted that if they don’t eat their safe food everyday, they could suddenly become allergic to it after taking a break from it.  Others might react from having it too much! It can all be so confusing. We have so much to learn about Miss A’s condition and how her body will respond to new foods. It is requiring an immense amount of focus for me to strictly concern myself with the present. I tend to get caught up in the “what ifs” and worries of what to do and how to manage in the future.

Despite putting everything she finds on the floor in her mouth, she is not interested in the apple. I gave her purée and I gave her small chunks of cooked apple. She loves grabbing them, squishing them in her fists. She brought them to her mouth and promptly spit them out. (I’ll admit I even left the ones she dropped, hoping she would at least eat them off the floor!)  If this continues with other new foods we try, we may need to look into concerns like food aversion and tongue and lip ties. It seems one concern just leads to another, and my mind races away like a train.

Thank you all for your support and encouragement in our journey, it means a lot to us.

Miss A enjoys eating ice at meal times, to help her with her motor skills and “how to” eat. Hmmm, maybe I should give her frozen apples….